So, as you know, or probably do at least, I went to Boston this summer to visit their Children’s Hospital, which so happens to be one of the best of its kind. It was an absolutely fantastic experience. Just one problem – now I have to give a presentation to some insanely clever people in thanks for their contribution towards my expenses.

Everyone who knows me is well aware that I am not a public speaker.

I do feel though, that I should probably make an effort to get better at giving presentations, since, regretfully, I expect it is something that I will have to do a lot in the future.

So, here you’ll find my latest draft as to what I’ll be talking about this weekend to the Medical Alumni of Christ’s College, Cambridge. This is going to be a car crash.

Firstly, thank you all very much for contributing to my expense of travelling to the states, and also for having me here today – it is very much appreciated.

This summer for just under four weeks in July and August, I travelled to Boston to observe in Haematopoietic Stem Cell Transplant at the Children’s Hospital Boston.

Children’s Hospital Boston is America’s Great Ormond Street. It’s located just a short distance from the city centre in the Longwood Medical Area. Longwood is very reminiscent of Addenbrooke’s – it’s an area of Boston with a very high density of hospitals and research and teaching institutions.  To give you an idea of the size, Longwood is about 170 acres to Addebrooke’s 100. It all centres around Harvard Medical School which is located in the heart of Longwood. The location of the medical school there is probably responsible for the growth of the medical institutions around it and, in fact, Children’s Hospital Boston was founded by a handful of Harvard Medical School graduates in 1869, 17 years after Great Ormond Street.

Children’s Hospital, like Great Ormond Street, consistently performs very highly in the US national league tables for children’s hospitals. Currently, it is ranked as number 1 overall and is number 1 in 7 of the 10 key specialties measured. The only hospitals that occasionally rank more highly are the children’s hospitals of Philadelphia and Cincinnati.

As with Great Ormond Street, Children’s hospital is valued very highly among Americans and is considered a national treasure and an example of all that is good with American healthcare. Just as at Great Ormond Street, Children’s is associated with high profile celebrities, sports teams, and huge charity events. The Jimmy Fund, an anonymous name given to the story of a child treated at Children’s that grabbed the nation, has a charitable marathon with thousands of participants, huge corporate sponsorship and advertising campaigns throughout Boston. The hospital itself has an incredible feeling; it’s an incredible environment with fantastic facilities, the hospital even has it’s own blood bank – although this poses many problems and expenses itself. Though the families there are clearly going through a terrible ordeal, everyone seems to be very confident that they are in the best place for their children.

In the States, people are able to be treated in a Children’s hospital at least up to 21, and maybe older if they become diagnosed with a condition that typically affects children. I remember while I was at Great Ormond Street, there deliberation as to whether to admit a 17 year old man with Leukaemia – though their primary concern was due to the size of the bed rather than their provision of care!

My coming to observe in the stem cell transplant department really occurred by chance. When I arranged work experience at Great Ormond Street, it was the only department that I was able to observe in. I thought that at least if I visited the same department in Boston, I would be able compare like-for-like, even though I am totally ignorant to the medicine involved.

I think the most frequent question I’ve been asked so far about my trip, is how I organised it. It actually wasn’t very difficult, just very time consuming. After googling for the most important person I could find in Stem Cell, I emailed in January – 50 emails and 3 telephone calls later, I was there!

The person that I shadowed was Dr Leslie Lehmann, a professor in paediatrics at Harvard Medical School as well as the Clinical Director of the Stem Cell Transplant service at the hospital. Although I knew she was an important figure, I hadn’t realised quite how important until I arrived. She seems to be the authority on stem cell transplant in the states, giving professional advice around the country, and internationally – being involved in guiding treatment in Africa and developing a new children’s cancer hospital in Egypt. I was surprised when she said that the religious views of the board of Children’s Hospital Boston stifled the early involvement with the Egyptian hospital, which had later left the hospital looking rather scorned when the hospital in Egypt became an incredibly good centre. I was surprised that religious views could interfere with such activity and wondered whether clinical decisions were ever stifled in a similar way.

Something that I found particularly unusual, though I am not sure how common it is in the States, is that the cancer treatment provided at the hospital is provided entirely by an external research institution – the Dana-Farber Cancer Institute. The DFCI was initially founded entirely to focus on researching therapies for childhood cancers, but has since developed to encompass cancers affecting all ages. The hospital’s relationship with the DFCI seemed quite unusual and different to anything that I’ve seen in the UK. It is almost as if the hospital as outsourced their cancer care to a private company. The hospital provides the nursing, rotating interns, and the facilities for care. However, the DFCI provides the fellows, attending physicians, and strangely even some of the computing and telecommunications. Additionally, some lab tests were handled by the DFCI while others by the hospital. Further, Dr Lehmann is salaried by both the DFCI and the Children’s hospital. This division of care seemed to be very wasteful of resources, and of the purchasing power otherwise provided by a large institution such as a hospital. I wonder, however, with the new commissioning powers available to GPs whether a similar situation will develop in the UK – especially if it turns out that some private providers are able to provide a better service than hospitals, it seems to almost make sense that a hospital would absorb that private provider – or at least develop a symbiotic relationship.

There are clear benefits to having care provided by an external organisation (especially if it is a research organisation such as the DFCI). One being that development of the service was able to be far more fluid and not restrained by hospital management. Since the DFCI receives a huge research income and charitable donations, it was also financially independent and able to provide care that otherwise would not have been possible. In addition to these logistical benefits, there were certainly benefits in the expertise available to patient care. The cancer service is able to draw on the expert knowledge of super-specialised consulting teams throughout hospital proper, but also on the knowledge of other clinicians working at the institute and their research interests and experience. I know that knowledge is shared between doctors in the NHS, but I felt that having an organised time away from the hospital each week for the purpose of exchanging information and seeking opinion was invaluable.

I don’t want to talk too much about stem cell transplant because I really don’t understand it well enough at all, but I thought you may be interested to see some of the conditions which they treat with it:

• Solid Tumours
  • Medulloblastoma
  • Lymphoma
  • Neuroblastoma
  • ALL
  • AML
  • Aplastic Anaemia
  • Bone Marrow Failures
    • Fanconi Anaemia
    • Dyskeratosis Congenita
    • Shwachman Diamond
    • Amegakaryocytic Thrombocytopenia
    • Diamond-Blackfan Anaemia
    • Severe Congenital Neutropenia
    • Haemoglobinopothaies
      • Sickle Cell Disease
      • ? Thalassemia
      • Metabolic Diseases
      • Immunodeficiencies
      • Gene Therapy

Transplant is either autologous or allogeneic, with donors typically being matched siblings or matched unrelated donors. I was able to observe the meetings with the donor search team and this is where I first noticed limitations in relying on private insurance – insurance policies have a maximum pay out for looking for a donor, and once that threshold has been reached searching ceases and best-match donor must be chosen from those already found to be available – luckily for the case that this related to, the search was able to continue out of funding made available by the Cancer Institute itself.

Stem cells can be harvested from the Bone Marrow itself, Peripheral Blood or Umbilical cord blood, the risks varying between each, it was the Children’s Hospital’s opinion that anything other than stem cells from Bone Marrow was second rate and more risky.

Some of the main and typical complications are shown here

• Hepatic Dysfunction
  • Due to GVHD, infections, iron overloading (due to blood transfusion) and drugs.
  • Mucositis – one of the most traumatic things to observe, since it causes appalling pain to the patients
    • Significant because it prevents nutrition intake, and medication absorption, also a concern for infection.
    • Haemorrhagic Cystitis
    • Renal failure
      • Fluid management, medication, bladder obstruction
      • Neurological complications
      • Infectious diseases
        • Obviously a huge concern in the immunocompromised, consequently there is a very wide spectrum of antibiotics, antifungals and antivirals administered. It is also important to consider the immunological history of the donor, as there was some complicated CMV activation, which was way above my head.

The most life-threatening being Graft Versus Host Disease is a T-cell mediated donor-to-recipient disease where tissue damage, donor lymphocyte activation and inflammatory effects can occur. Since GVHD can be multisystem which often led to transplant patients being cared for on the intensive care unit. Organ failure as a result of the drugs used in transplant are also causes of being moved to intensive care. I found these cases especially interesting and was able to spend some time on the intensive care unit every day. I find ICUs fascinating – for care so intensive, the units are always so quiet. The hospital had several ICUs, the one associated with transplant had 30 beds and three consulting teams. One ICU at the hospital is designed for end of life care. They were very proud of the statistic that if a transplant survives a stay in the ICU, their chances of success with a stem cell transplant are equal to patients not requiring intensive care. However, the number of patients returning from the ICU remains low – at around 60%.

Although I have been on work experience placements several times before, I have never witnessed a doctor communicating bad news. While at the hospital, I was able to witness this very difficult situation several times, all in the ICU – I think such encounters have been truly invaluable, especially since the Dr Lehmann was incredibly adept at approaching them with realism and positivity.

Also in the ICU was a patient whose parents felt as though the care being administered was negligent. It was very interesting to see how the hospital and its staff dealt with such an accusation. The family was able to have several meetings with all the specialists involved to raise their concerns, which were addressed promptly. Irrespective of the doctors’ belief in the appropriateness of the care, all doctors treated the complaint with respect. Obviously – such a litigious system as in America, it is certainly in the hospital’s interest to ensure that complaints are resolved amicably.

One of my primary reasons for travelling to the US was to get an experience of how the American healthcare system worked, especially with respect to such a capitalist system and one that relies so heavily on private insurance contributions. I have certainly learnt a great deal about the US healthcare system generally, but since Massachusetts is such a forward thinking state, it has already passed its own healthcare reform bills, such that it is a window into the future that Obama is seeking for the rest of the US.

With the percentage of Americans uninsured standing at about 17%, with enormous disparities in that figure between ethnicities – 40% of the Hispanic population is uninsured, Massachusetts’ figure of 3% uninsured is very impressive. They have achieved this through tax breaks, penalties (loss of tax allowances), strong regulations for insurers (for instance outlawing the rescission of policies and regulating annual and lifetime limits) as well as an open market for policies and an advisory body. Their Medicaid and Medicare policies have been made more inclusive, covering a greater proportion of the poor, young and elderly.

With respect to the care provided by the States, the approach is certainly different to what I have seen at home. Here, I feel that scientific evidence, patient communication, and doctor experience are at the centre of the healthcare provided. In the states, however, I found that often patient communication – though certainly not avoided – was not as highly valued. Similarly, the Americans seem to approach diagnosis and treatment like nuclear warfare, throwing every possible diagnostic test and imaging test at a patient and trying to muddle through the minefield of results returned. I have found that in the UK, a test is sent when something is specifically being investigated. I suspect that such thorough testing is a consequence of the litigious nature of the system. If a doctor does not have rigorous evidence to support their diagnosis and consequence treatment, they could easily find themselves at the end of a vicious court case. Additionally, since these tests have become so standard, any doctor that does not carry out such tests may be considered as providing substandard care. I think that generally, the care received by patients at specialised tertiary centres such as Children’s may be marginally better, if only because of the more expensive technology available and the higher ratio of nursing, but as significant an improvement, when considering the vast differences in expenditure.

I had hoped to avoid talking about the political differences between the US system and the NHS, but after unearthing some shocking statistics, I didn’t think the presentation would be complete without it.

The Americans public spend on healthcare is $3307 per person per year, and that spend is to provide emergency room care, care for the very poor, care for the elderly and veterans. The private spend is $3982, total spend is a massive $7289 per person. The NHS costs the UK $2446, with private spend being $547 and total spend being $2993. The American government spends more on healthcare than the British on the NHS but provides so little. As I mentioned, 17% of Americans are uninsured, and disparities between ethnicities are enormous. However, even insurance does not guarantee safety – 62% of bankruptcies in the US are due to medical bills, even though 75% of those made bankrupt by their bills were insured. It really beggars belief.

Some of this huge difference in spending can be explained by hospitals having to be seen as providing better care than another, so as to gain more custom. This increases the spend in physicians, drugs, and technology. Additionally, there is a huge cost in having so many individual units, which, unlike the NHS, cannot utilise economies of scale. Further, they are expensive to administer and manage individually. An additional cost, which is often overlooked is the lack of homogeneity in the American population. Few other countries have such a diverse population and the cost of caring for the greater spectrum of diseases is great, similarly treatments success varies between the different ethnicities. Also since insurance policies limit the amount they will pay out annually or during a lifetime, there are fewer visits to primary care and often preventative medicines and check-ups are not covered for or taken up, this of course can make treatment more expensive if an illness is diagnosed late.

I just wanted to briefly show that Cambridge even manages to get involved in things all the way over here. In the ICU I met Dr Tasker of Selwyn, I had actually hoped to speak to him about his thoughts of the US healthcare system, but I only met him on my last day. Also, one of the drugs used frequently in transplant to ___ is based on antibody therapy developed here by John Mcafferty.

Irrespective of the differences between our systems, child healthcare is still incredibly important. I have always enjoyed observing in paediatrics because of the resilience of the young patients who always seem to be completely unphased by their ordeal. I have always felt sorry for the parents because it must be tremendously worrying, before visiting Children’s though, and seeing this collage, I had never really considered how it effects the patient’s siblings. This picture is just a quick snap that I was able to take of a vast wall called the Emotion Ocean containing post-its of how the brothers and sisters of patients are feeling. It is very touching indeed.

I would like to thank you again for your contribution to this experience and for having me here.

Thank you.